Have been told today that it is best to have my ovaries removed as the Zoladex injections have not made me menopausal.
Can anyone tell me how they felt after the ovary removal and what the recovery time is likely to be?
I am only 36 so not sure I want to go through even worse menopausal symptoms than am experiencing at the moment.
Thanks for your help.
Hi dms,
I had my ovaries removed by keyhole surgery in1999. It was a simple procedure went in hosp 8.30 and was home by 8pm. Three little holes,one in navel to put camera and the other two on bikini line. Looked really pretty like 2 kisses!
I had hot flushes at night that started at my toes and went straight up to my head. For me red clover,sage and don qay (sorry cant spell it)controlled these. You can buy them from Holland and Barret. My partner said I had turned into"a screaming skull" I will admit to being a bit moody! We are now very happily married so it cant have been that bad. I was 48 at the time and had already had my children so was lucky that this would not cause any emotional problems.
Others on the forum have had this op so I am sure you will get lots of helpful advice.
Love Debsxxx
Hi dms33
You may find the BCC fact sheet on ovarian ablation useful to read, it can be found by following the link below:-
breastcancercare.org.uk/docs/ovarian_ablation_june_2007_0.pdf
I hope you find this helpful.
Kind regards
Sam
BCC Facilitator
Can I ask why “they” want you to have your ovaries removed?
There can be some breakthrough periods on Zoladex. I had this myself. I stopped Zoladex after 13 months because I couldn’t bear how it made me feel and I just stayed on Tamoxifen alone. I only have about 3 or 4 periods a year now. I am now 37.
There is very little evidence to suggest that having your ovaries removed will prevent a recurrence. However, if you do have them removed when you are premenopausal you are then opening yourself up to things like Osteoporosis which you shouldn’t normally start having problems with until your in your 50’s - 60’s. This is an issue which you do have to address as it’s a very real consequence of early menopause.
Personally, I’m hoping I will very soon go through a natural ( but still early ) menopause. Once this happens I’ll have my ovaries taken out surgically as cancer can still affect them even when they’ve stopped working. So they may as well come out!
I was very happy to have my ovaries removed. I am strongly ER++ and 43.
Aromatase Inhibitors appear to be outstripping tamoxifen in efficacy now and I am quite happy to be surgically post-menopausal and have access to them. Without ovaries I am also at reduced risk of developing ovarian cancer.
Women with breast cancer are at increased risk of developing ovarian and gynae cancers even if they don’t carry BRCA gene mutations.
Osteoporosis is a risk - but then bisphosphonates are exceptional and your bone density is strictly monitored. (Both my mother and grandmother have dealt with osteoporosis with no trouble - one pill a week.)
The op itself (the fabulously named bilateral salpingo-oophrectomy) is a doddle and done laparascopically. A day patient job with no discomfort or pain afterwards.
Best of all I get no more lousy periods! That alone is worth a few hot flushes. And surgical menopause is supposed to be shorter than natural menopause.
Good luck whatever you decide. I was happy to do everything possible to switch off the oestrogen supply line which is feeding this lousy thing.
I agree with your thoughts about switching off what’s feeding your cancer BUT I’ve been well and truly through the “do I” “don’t I?” mill for the last 4 years with regards to having my ovaries removed and it’s really not that simple a decision for some people.
I was 32 when diagnosed. To induce an early menopause at this age is accepting the possibility of a reduced quality of life due to this occurring and living with the non-reversible effects. Not an easy decision for some at a young-ish age.
Chemo,Zoladex and Tamoxifen have buggered my bones well and truly and by regular DEXA bone density scan’s I’ve found that I now have early osteoporosis.
Yes, Bisphosphates are out there - but few people have studied Bisphosphates long term use. The short term studies that are available have found that jaw bone necrosis is a possible side effect unfortunately. Something like this which has been proven, has to be weighed up by anyone considering taking them. You then end up treating the side effects of a treatment given for something else - and so it goes on. For this reason and the fact I wanted to limit more drug use - I decided not to commence them.
Instead, I took matters into my own hands and now take intensive Calcium and Vit D supplements daily and have increased my exercise substantially. I also see a Naturopath. Works for me, but not for all.
Although I would dearly like my cancer to go away and never come back, I don’t know that having my ovaries out is the big answer. Yes, it would help reduce my chances of developing a gynae cancer - but at what other costs in the meantime, at age 37.
I have very few periods these days ( only 3 this year so far ) so I figure I’m on the way to an early menopause anyway. If it does come about in the next year or two, then once certain I will opt to have my shrivelled up old ovaries surgically removed. Until then or unless I get a recurrence, I’m hanging onto them.
I say if your cancer is not high grade and you are in remission and you’re receiving regular thorough checks and your pre-menopausal - hang onto your ovaries for as long as you can before you decide to give them up. They may well produce oestrogen but natural oestrogen also helps your body and helps you feel young,keeps your skin good, your tissues healthy, your bones strong etc, etc.
Also - Oestrogen isn’t only produced by the ovaries - it’s also produced by the adrenal gland which is what Arimatase Inhibitors work on.
So - you may have your ovaries removed - but you’ll still be producing oestrogen from other sources and it’s never completely obliterated!
We just have to do the best we can and make decisions based on what’s best for US as individuals and not panic into opting for various treatments which can be very, very difficult to treat when their side effects often appear down the line. Quality of life has to be taken into account.
Jaw necrosis is an extremely rare side effect of bisphosphonate use and it is a remarkably effective drug in dealing with osteoporosis both actual and risk of it.
And jaw necrosis has only been flagged up in intravenuous use of bisphosphonates not oral use which is the most common form.
There is risk in everything. There comes a point with tamoxifen when it can begin to feed ER+ cancers.
If you have your ovaries removed you are regarded as post-menopausal. Aromatase Inhibitors wipe out all remaining oestrogen. So in that case yes, ALL oestrogen would be removed from your system.
It is a personal decision for all - we all have to live by the decisions we make.
I understand your point of view but for me it was a very easy decision to make. I have a 17 month old baby to stay alive for. Quality of life won’t kill me - cancer might. Quality of life won’t rob my son of his mother but cancer might.
I may be storing up all manner of cognitive, mobility and general health problems due to oestrogen deprivation for the future - but as I am simply striving to HAVE a future it is a risk I am fully prepared to take.
Good luck to all - we have to make some appalling choices with this thing.
The likes of Arimidex does work on blocking oestrogen made from the adrenal glands but while it certainly reduces it ( doesn’t state that it obliterates it completely ) - you can’t remove oestrogen from your body completely( what about all the foods?) whither by taking aromatase inhibitors or having your ovaries removed or both. Not arguing a point here, just stating what it says in all the drug info available and what I’ve discussed with onc’s etc.
Of course no-one here is questioning what your priorities are when it comes to living with cancer or not.
All I’m saying here is that it’s not as easy for some to agree to an oopherectomy.
It’s not as easy as ‘just get em out’ for some folk - no matter what percentage of increased survival it may or may not come with.
I’ve been there, I’ve even had consults with specialists brought in to offer their opinions of whether having an oopherectomy is the way to go or not. Most of them can’t even decide.The benefit of oopherectomy post breast cancer is quite minimal, and also continues to be debatable. Of course that minimal benefit can be all that we need to hear.
I didn’t get round to having children before I got cancer, but I imagine that for some who’ve had it and still have a desire to have kids, that they want to hang onto their ovaries. That’s just one reason some might want to hang onto them. I’m sure they will all weigh up risks of recurrence against their dream of having children. Of course no-one envies that decision. Oopherectomy is final, absolute, non-reversible.
Not everyone is ready or able to accept that finality.
I wish I’d known nearly 5 years ago that my bones would be so badly affected by all the drug treatment I received at the time. I don’t fancy being an old woman at 37 funnily enough. I am becoming more and more aware of how cancer treatment options can affect you years down the line physically, and how the new health problems open up allsorts of nasties. As Bisphosphates ( oral and IV ) are one of many drugs which have not been studied over the long term yet, I’m choosing to give them a miss - for as long as I can. My choice.
Consequences of any treatment either acute or years down the line need to be thoroughly addressed and planned for with the patent’s at the time of agreeing to any cancer related treatment.
Living with cancer is the ultimate priority here, but living with cancer and all it’s relations is something else all together.
All the best msmolly with you and yours. May you have just as many years ahead of you as I hope for myself.
Dms33
i have been on Tamo for 18 nths now and only missed 2 periods, i was told by my onc that they would stop within 6 mths, but not a chance they have got heavier and i suffer terrible cramps.
When i asked onc if i could have ovaries removed she said under no circumstances would they do this operation, unless effects from tamo were severe which with me they are not im happy to say.
The reason for this is because as onepearlyb says you can then begin the onset of osteoporosis which does not seem a very appealing thing…
Every day i thank my lucky stars that i have come through this and i dont think that openng myself up to another illness is what i will be doing. Tamo is helping me so i personnally will suffer the side effects…
Whatever you decide good luck to you…It is sooooo confusing.
Luv Allison xxx
onepearlyb
The questioner asked about people’s experiences with ovary removal - I have simply shared my personal experience.
I have no axe to grind on this issue - I am not banging any drum urging people to sally forth and get their ovaries whipped out.
I think I made it very clear in my earlier post that I think it is an entirely personal decision.
At no point have I ever suggested that it is an easy decision for everyone to make.
I took time to consider all evidence and after several consults with oncs and surgeons I made a solid informed choice which I am very happy with.
I am not over the moon about being suddenly postmenopausal at 43 - but, y’know, worse things happen at sea.
Because I have very direct personal experience of osteoporosis I don’t see it as this terrifying untreatable spectre that some do. Far from it.
I actually don’t agree with your claims about phyto-oestrogens, AIs or the efficacy of oopherectomy but I really don’t want to engage in a debate about it because my brain is fried with chemo and I am too tired.
I wish you well with whatever the future brings and hope this hideous disease is out of your life for good.
Please don’t take this the wrong way. I don’t want to hijack this thread and will happily start another one if that’s preferred but it is related.
I had 2 tumours, 1 which is triple neg and so not responsive to hormones and one that was slightly responsive er 2 out of 8 and pr 3 out of 8. I’ve done chemo, will be doing rads and there’s still discussion of hormone therapies or oblating ovaries/removal.
I’m 33 and very very concerned about the effects of messing with hormones at this level, especially as I’ve already done so much treatment and I do NOT subscribe to the point of view that drugs are all that’s available to me. I am making changes in my lifestyle too.
I for one would love to hear what kind of effects you’ve had from your treatment onepearlyb, how on earth can someone like me decide whether to agree to any hormone treatments or shutting down of a critical part of the whole endocrine system without that kind of info to add to the picture.
I respect those who’s tumours were strongly responsive may feel it’s a no brainer but I’m sure you can see for some of us it is far from a no brainer…
onepearlyb please do share… I for one NEED to know what someone like you has experienced.
I was on the pill for 15 years and as such I’m not totally convinced that that doesn’t paint a different picture, as pressumably those were the hormones that fed the one that was slightly positive… what a can of worms.
If this offends you msmolly I’ll start a new thread but I thought it’s relevant to get the full picture over this stuff.
Thanks
Angie
Angie,
I will try to send you a private message as I am also conscious of hijacking someone else’s post.